Charitable and Voluntary Sector

Lord Sharkey Excerpts

Thursday 30th April 2020 Lords Chamber

[Lord Sharkey (LD)]

My Lords, I declare my interests as chair of the Association of Medical Research Charities and of the Specialised Healthcare Alliance, a coalition of over 100 charities representing patients with rare diseases. I will make two points.

The first is about charity-funded medical research. Medical research in the UK depends very significantly on charity funding. Last year, AMRC members contributed £1.9 billion, about half of all public funding. However, Covid-19 has reduced charities’ incomes very significantly, and this is turning into a large reduction in research spending, probably at least £250 million for 2020-21. Already, more than half of AMRC’s members have stopped, paused or delayed the majority of their clinical trials and studies, affecting around 126,000 patients who should be taking part but now cannot. Medical research charities may not benefit from the charity support package announced by the Chancellor because they do not provide commissioned frontline services. These charities urgently require emergency bridge funding so that they can maintain their contribution not only to the Covid-19 frontline, but also to the many other critical ongoing and planned research projects, in which this country often leads the world.

My second point concerns rare disease charities, which provide vital and often unique support to the more than 3 million people in the UK who will suffer from rare diseases during their lives. These charities are often small, and they have seen income fall as the pandemic continues. They need urgent help but are concerned that they will not qualify under the guidelines announced for the charity support package. The Government are finalising the details of support packages for charities; I urge them to take into account the needs of medical research charities, the small, rare-disease charities and the millions who depend on them, when deciding who gets what support.